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Castleman disease: Finding the strength to fight through community

Published 29 Apr 2021 • By Courtney Johnson

Victoria, a patient living with idiopathic multicentric Castleman disease, shares how she has found the strength to fight back against the disease in a patient community.

Discover her story below!

Castleman disease: Finding the strength to fight through community

Hello Victoria, you have Castleman disease, can you tell us a bit about it? What type do you have? When were you diagnosed?

I was diagnosed with idiopathic multicentric Castleman disease (iMCD) with TAFRO syndrome in January 2016.

How did you react to the diagnosis?

I struggled with so many emotions: shock, grief, fear, frustration, feeling alone… What scared me the most was the survival rate - for iMCD it’s only 5 years!

Who did you turn to for help?

The doctor who diagnosed me wasn’t really familiar with Castleman at all, so I went to my primary care doctor for help. Fortunately he was able to help me do some research and find a specialist who could help me.

Unfortunately before I could see the specialist I landed back in hospital and had a difficult time.

In my searching on Google I found the Castleman Disease Collaborative Network (CDCN) and I signed up. I didn’t really take full advantage of the patient organization until I was hospitalised, but once in hospital I realized the value and importance that patient communities can bring to those of us battling chronic illness. Dr. David Fajgenbaum, one of the cofounders and a researcher in Castleman disease, reached out to me and my family to share information and insights, but also understanding.

How does Castleman disease affect you in your daily life? Have you had to change your routine or habits?

CD has really hindered me and my quality of life. I’ve spent a lot of time in and out of hospital and I’ve undergone a lot of treatments. I’ve had multiple blood transfusions, one platelet transfusion and 5 weeks of dialysis. I also had sepsis with 90lbs of fluid and muscle atrophy.

On top of the physical symptoms and ailments I’ve had, I also struggle with anxiety and depression at times. 

How has being part of a patient organisation helped you in your battle with Castleman disease?

I’m so thankful because it has not only helped me with my health and fighting through CD, but it has put me in contact with so many other patients and loved ones. They’ve become like family to me.

I also joined the CDCN’s Warrior team and it’s given me a sense of fighting back against the disease and that I’m doing my part to help find a cure. It’s also given me the ability to help other CD patients.

Do you have any advice you’d like to share with other members living with Castleman disease?

Be your best advocate. For many of us, you are the only CD patient your doctor has, and you are the doctor’s source of information on the disease. You know what’s going on with your body. Don’t let your doctor brush you aside. If you need to seek second opinions or go to a doctor that will listen to you then do that.

Always use the CDCN as a source of information, as it really is the best out there.

Finally, reach out to other CD patients - we are always willing to help or just listen if you need to vent!


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Testimonial adapted from the CDCN

avatar Courtney Johnson

Author: Courtney Johnson, Health Writer

Courtney is a content creator at Carenity and focuses on writing health articles. She is particularly passionate about exploring the topics of nutrition, well-being, and psychology.

Courtney holds a double... >> Learn more

2 comments


Hender65
on 30/04/2021

Victoria 

Thank you for sharing your story on the community site I am newly diagnosed myself and am almost at the point of receiving treatment. I have been diagnosed but not what type or stage I have given lots of blood and had a bone marrow biopsy I now have a pet scan in 4 days time & after this I’m told the haematologist shall be able to recommend a treatment plan. Getting your head around the fact that it’s so rare and almost nobody has heard anything about it including the medical community is hard to accept. It’s with the thanks of people like you that I am learning more. Thanks again for sharing your story I wish you well and every strength to continue your fight for a long and healthier life.

John 


Dhagggart
on 05/10/2021

thank you for shareing it actually feels like you are telling my story and experance as i went through all the same things but now after being treated with sultuxamab i am doing alot better and over a year in remission , so all i can say is stay possative and good luck and god bless

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